I was looking over past entries this weekend as I sat here with Rudy and enjoyed looking through Greg Lawler’s pictures again. Seems like a lifetime ago, but if you’ve joined us on the journey more recently, I’ve put a thumbnail on the right column that can take you to them. They’re too special to get buried in the archives. Thanks again, Greg!
Category: Pictures
Grandma Jo and Oma Will Be Jealous!
Rudy’s first day of 2009 included family and football! Rolf, Max, Olivia and Grandpa Dick arrived close to noon. Wilson wanted a quiet day at home in SB so Grandma Jo was kind enough to stay home with him. The rest of us enjoyed lunch together before we settled down in Rudy’s room for the Rose Bowl. Rudy had a good day today with only a small fever in the morning and then the periodic lowering of his oxygen sats. This morning’s chest xray looked good and he continued to tolerate the ventilator rate at 24bpm all day! It was a day to sit back and stabilize.
Grandpa Dick had an opportunity to hold Rudy for a bit before his numbers went a little wacko but it was special nonetheless. Rudy’s numbers were great when he was relaxed and asleep but as soon as he woke up, it was hard to control his breath rate and oxygen saturation. He’s getting another blood transfusion tonight and resting comfortably. Rolf et al left for SB at dinnertime. I’ll head home tomorrow (Friday) afternoon, Rolf will return to UCLA Saturday and Sunday and then it will be my turn again Monday-Friday of next week. It will be interesting to see what next week brings if the chest fluid issue is truly behind us!! Baby steps…baby steps…
An eerie resemblance
Our many readers in Kansas might be very interested at the insight we got while watching the “Insight Bowl” last night. Everytime they showed KU coach Mark Mangino, I was trying to place the face. Perhaps Rudy is destined for Jayhawk greatness!? (scroll down below)
Happy New Year – 2009
Happy 13-week Birthday!
Well, here we are on the eve of yet another holiday. Olivia called earlier to ask me where we keep balloons! It sounds like quite a New Year’s Eve celebration is being prepped at home in Santa Barbara. Rudy and I are gearing up for a big bash here in the CTICU. I walked to the drugstore yesterday to stock up on some yummy snack foods to share as we await the countdown to the new year tonight. It has been a full day today with a handful of patients in our unit either being discharged or sent to the floor so we’re down to 3 patients again…(the other two are different from the other two of last week). The CTICU sure has been in a flurry of activity this past week with what feels like a revolving door of patients in and out…and then there is Rudy who has very quietly sat back and made his slow but somewhat measurable progress.
Today was much like yesterday…he spiked a fever in the morning and battled a fluctuating blood pressure but by afternoon, his fever broke and his numbers were back where they should be. Today’s chest x-ray detected a small amount of fluid outside the left lung but still not enough to make a concrete decision about the pleurodesis at this point. His red blood cell count was down so he needed another blood transfusion and one of his picc lines needed to be replaced. I enjoyed helping Nurse Jenny give Rudy a bath. He now has a fresh gown and fresh linens…it’s a good thing, too, because Rudy is going to have a long line of nurses wanting their first kiss of the new year to be with him! Dr. Mary, though, has already reserved her kiss to be the very first at the stroke of midnight!
It’s so hard to look much past tomorrow…hard to imagine what 2009 will bring but one thing is for sure – Rudy’s first New Year celebration will be filled with lots of love, an ever-growing fan club, and a never-ceasing hope for a future nestled in the hands of God…a comforting reality in the midst of all the uncertainty.
Christmas at home…
Our Christmas wish for two lazy days at home came true–well maybe not altogether “lazy” as two of the activities included putting together a trampoline (thanks, Oma and Opa, for a Christmas gift that’s already seen hours of laughter) and weeding the rose bed that’s been bugging me for weeks now (but I haven’t been home with enough daylight hours to do anything about it). So, nice to have some therapeutic activity and, as I know some will read with concern (like you, Jane), my back feels pretty good after all is said and done.
As for Rudy, he’s received the same attention and doting care he’s grown accustomed to. We’ve had regular contact with Nurse Katrina and Dr. Robert. He’s having some of the usual hiccups–unfortunately the chest tube on the left has continued to put out significant amounts of fluid (70cc daily) that now has a high percentage of chyle, so we may be seeing chylothorax on the left side which might require pleurodesis on that side. Perhaps a bit too early to see what course Brian will want to take, but he did prepare us for this possibility. Dr. Robert became concerned today about his stomach and how it was processing nutrition so he halted the tube feeds. Depending on what an Xray shows tomorrow morning, they may start again–they always want to be pre-emptive and never get to where they’re chasing Rudy. His blood pressure is being watched, but it’s acceptable. It’s been a bit on the high side lately, but Robert wants to use as little medicine as possible in order not to stress the kidneys. Robert also halted the vent wean today as he doesn’t want to throw too much at Rudy at once, so the rate is about 35 bpm and Rudy’s comfortable there. They’ll decide what fronts they want to move on tomorrow, breathing and feeding-wise.
We are blessed to have Grandpa Dick and Grandma Jo with us. Trish’s Dad finished his 6 weeks of radiation treatments on Wednesday and, on Thursday, her parents boarded a plane bound for LAX! They plan to stay a couple of weeks before Dick’s oral chemotherapy begins. We are so thankful they were able to come and celebrate a late Christmas with us here at home. The big event today was Olivia’s first haircut! After resisting the idea for several months, she decided yesterday that she was ready and that she wanted to donate her hair to “Locks of Love”. Our little princess was very excited about going to the salon and was quite the little lady sitting patiently as the stylist clipped away. We’ll miss her trademark long locks but the end result is pretty adorable.
Thank you for your continued prayers! It is hard to believe that we are coming to the end of 2008 with our Rudy still at UCLA and still with no clear indication of when we’ll bring him home. Prayers for continued endurance and optimism in addition to full recovery for Rudy are GREATLY appreciated.
Merry Christmas…
from our family to yours!!!
It’s been a great Christmas so far here in our unique environs. Rudy has been stable. We were glad to find out that what fluid is coming from the left chest tube is only 8% chylous so perhaps not another issue of chylothorax. He’s breathing much better since the fluid came off, so Dr. Robert might just start to slowly wean the ventilator tonight as his nutrition looks good. The kids discovered there had been a visitor overnight, so the day started with presents and fun. Since then, the day has been full: fun with Nurse Kelly, Nurse Aliza, Drs. Abel and Robert; visits from friends, firefighters and (yet another) Santa. Things are just getting started as Trish is set to go pick up Grandma and Grandpa at LAX and, after they have a chance to visit with Rudy, we’ll all head back home for a couple of days enjoying a lazy Christmas at home.
I’m not sure any more words could do our Christmas celebration justice…so here is a pictorial diary of the past couple of days…
What would a Christmas Eve in the CTICU be without a traditional game of “udderball”. All you need is a surgical glove, an extension cord and an empty room with a very expensive ICU rig to serve as stantions.
Hot Chocolate, the Christmas Story and Christmas Carols at Rudy’s bedside – (Christmas Eve 2008)
The Bears are joining us for Christmas
Well, unfortunately the CAT scan revealed some pockets of fluid on Rudy’s lungs. On the right side, they’re very small and may be post-operative secretions which couldn’t be handled by a chest drain. If they need to be removed it would be with some very focused procedures. On the left side, there was a significant pocket of fluid which Drs. Robert and Brian decided to drain. Clearly not a step in our preferred direction, but thinking positively, previous fluids were seen to accumulate rapidly on Rudy’s chest Xrays and noticeably impaired his breathing. That wasn’t the case with this pocket which yielded only 70ccs of fluid on insertion. Robert and Ryan have sent a sample to the lab for testing, but it didn’t readily appear to be chylous. Please pray that it’s not…just some post-operative seepage from the tissue following the pleurodesis. So a drain is in, which means we’ll be joined by the generic fishing bears again (remember them?).
As several have said how much they appreciate having specific items to pray for, please pray for the fluid in Rudy’s lungs to resolve without needing pleurodesis on the left side. Also, pray that he would continue to make progress on the ventilator. Dr. Robert is very pleased on a number of other fronts I mentioned in my earlier post today, so we’re very grateful and are praying that God would continue to let us see progress.
Dr. Robert was very kind in granting Livy’s Christmas wish to hold Rudy. He held off on inserting the chest tube for 30 minutes so that both she and Max could have a chance. Once again, one of those teary-eyed moments snuck up on us as we looked on.
In the Midst of all the Craziness…
blessings abound! As you can tell from Rolf’s frequent updates, the past couple of days have been emotionally draining and the threat of dialysis today was a real discouragement to me so, I admit, I haven’t felt like following up on Rolf’s “teaser” yesterday but I realize that it’s important for you to hear of the blessings as well as the concerns…
It’s funny how extremely focused I am when I’m at the hospital with Rudy and how very UNfocused I get when I come home. I’ve kind of been walking in circles around the house today unable to focus on any of the “to dos” and was pleasantly surprised by a friend who took the initiative to come over and take me and Olivia to lunch while the boys were at a friend’s house playing video games…this past week with Rudy was so full with so much to process and I didn’t fully realize the impact until I got home and let down a bit…time with a friend was a warmly welcomed distraction – thanks Lisa!
The good news this evening is that Rudy’s kidney function has picked up. Rolf has been reporting progress to me regularly. He’s done at least 3ccs every hour (the target set by Dr. Abel) and did twice that during the 7pm hour. Some of the lab numbers are elevated but nowhere near the danger levels. So, thanks for praying and please continue. The chest tubes have been dry and we want them to stay that way, so that’s encouraging progress. Hopefully the pee tube will continue to see lots of acti0n overnight so we can truly feel like we’re moving forward.
Yesterday was another one of those surreal days that included drama, anquish, tears of concern, tears of joy AND fun all wrapped into one! It all started when I returned from breakfast to find nurses Sara and Heather and doctor Andy S. in Rudy’s room mixing a strange concoction at Rudy’s bedside. When I greeted them with a cheerful “hello”, they all looked up with wide eyes and a collective sigh of disappointment. Dr. Andy quickly excused himself and the gals started to laugh. “What’s going on?”, I said. “Oh, you came back too soon!”, they replied. I took a closer look and realized the strange concoction was plaster! They were attempting to get Rudy’s hand and footprint for me as a surprise…come to find out later, nurse Gladys was involved in the plan as well! I mentioned to nurse Sara a few days earlier that I wished I had had the presence of mind to ask for a foot print of Rudy when he was born. She remembered and found a kit to do just that when she was out shopping. I was so touched by their thoughfulness, teared up and then quickly offered to join in and help. Unfortunately, the plaster project ended up being a bust but just as we were aborting the project, social worker Erin stopped to see what was going on. When we explained how the plaster wasn’t working to get the prints, she told us to wait just a minute and came back with some molding clay her department uses for just such a purpose! With the help of nurse Sara holding the clay and with Erin’s help unclenching Rudy’s little hand, we got the prints! The prints are precious but I think I cherish more the visual of all these sweet gals working so hard together to fulfill a mom’s random request – thanks Sara, Heather and Erin!
Shortly after things settled down from the impromtu craft project, Dr. Dan came by to let us know of a “special guest” arriving soon to greet some of the pediatric patients. I made a couple of calls to confirm and soon Rolf and I were headed down the hall with our camera in hand in hopes of getting a special gift for Olivia! No, sorry Uncle Alex and Aunt Teresa, it wasn’t Brad Pitt (although, he is the Brad Pitt of the tween generation )!!!
Rolf wasn’t lying when he said he’s HUGE!!!!
Yes, it was none other than…..
ZAC EFRON!!!! If you don’t know who that is, your kids are OLD and you obviously haven’t been out from under that rock you live under much in the last 3 years.
After the movie premiere incident, I stood there eating crow as I waited for my turn to shake Zac’s hand and ask for an autograph…for OLIVIA! He was very sweet to grant my request and even sweeter to the mesmerized kiddos. So, thanks Zac and company!
‘Just another crazy day in LA – LA Land.
“Little Rocky”
Rudy made it back to the room at about 7:30. He’s resting comfortably now, but looks like he went about twelve rounds–but even winning boxers come away with some pretty tough lumps. Beyond the pain from pleurodesis and the dinged feet from the lymphangiogram, he now has a big bruise on his left side from the chest tube insertion and another on his right arm from where the team tried to deal with the pic line. We’ve also noticed (see picture below) that he’s losing some hair, perhaps just baby hair coming off, but if anyone’s entitled to stress-related hair loss, I think Rudy qualifies. He came back kind of chilly, so we’ve got him bundled up with a hat and socks (I chose Spiderman for our superhero) and Nurse Susan just wheeled in a heat lamp and got him tucked under one of the many gift blankets he’s received. Been quite a week for the little guy.
In our quest to keep the positive in view there is encouragement–beyond simply being glad there aren’t any procedures for Rudy in the upcoming days. The right side of his chest is draining very little fluid–at this point we can’t say we’re in the clear, but much better to have it this way than seeing lots of fluid. Dr. Dan had a chance to check on the pleurodesis while he was in the cath lab and he thought things looked really good. They did see some fluid on the left side, so Dr. Dan put in a chest tube, but it’s a very tiny one. He only found 10cc of fluid and it appeared to have a lot more blood than chyle, so we’re hoping it’s just from yesterday’s procedure and not more chylothorax. The lab will tell us definitively what the mix of fluid is and we’ll also watch closely to see how much drainage there is. Throughout the procedure and now back at the room, his numbers look really good. Dr. Dan continues to be optimistic as he sees Rudy fighting–he responds to trauma with an increased heart rate; he gets upset about things so that the team needs to take measures to calm him down. He gets concerned when babies go through procedures and ups and downs that are part of an ICU stay and seem rather lethargic and unresponsive. Good to have an expert confirmation of what we’re learning about our son’s character. He’s a fighter–go, Rocky, go!
Rudy's Beat 